Waiting for results

Mtngirl7533

I have written on this site before when I had an issue with sinuses and head and neck cancer was at least a question. That was all figured out and I was one of the lucky ones! I am writing now as it is my husband who is having a serious issue! He has had a hard time swallowing for at least the last couple of months and has lost weight. He finally had an endoscopy today at the hospital and they couldn't even get the scope past the tumor. The doc did a biopsy and put a stat on the results as well as CT Scan and appt with gastro doc. We will know more within 2-3 days when results come back. I learned from this site an imporatant lesson that it isn't cancer until they say it's cancer! Unfortunately the doc literally told him that it does look very suspicious for cancer. Of course biopsy will tell all! I am praying that if it is cancer that it hasn't spread! I tld him about this site that helped me in my time of need so I will be back to update as well as get all the info I can for him! Ironically I have had GERD for yrs. The past several months it has increased, burning in my throat intense. The doc increased protonix and its getting alittle better but considering asking the doc to order endoscopy just to make sure all looks alright after having GERD for yrs. Please know, I am so much less worried about myself then I am my husband but do know what GERD can do over the yrs. We can't have both of us sick. I will need to help and caree forr my husband! Thank you to all who wrote to me in the past, you will never know how much I appreciated the advice and encouragement! I will update soon and God bless all!

LorettaMarshall

Mountain Girl ~ Will await your update

Dear Mountain Girl:

If you were born in the mountains, even if you move to the bright lights of the city, memories of those hills remain with you forever.  I say, it's having the best of both worlds to have been born in the mountains before coming to the big city!  So not sure if you really are a mountain girl, or if you just love to visit the mountains, but I like your name. 

You’ve come to a good link for information about Esophageal Cancer, if that is indeed the diagnosis indicated by the Endoscopy.   And I must say that what you say about the Endoscopy is alarming.  And as for you, I would definitely ask the gastroenterologist to conduct an Endoscopy for you also.  GERD can ultimately turn into something much worse, as I’m sure you are well aware.  So for now, we will just wait to hear further from you. 

Increasing the dosage of some type of omeprazole is not always a “fix-it” solution.  But we will wait for further word from you.  In any event, you will certainly want to have a SECOND opinion, if the endoscopy results show cancer.  Truly, this is a scary time for both of you.  However, there are plenty of us here who know about anxiety and bad times. We never want to say “welcome” to another cancer patient, but if such is your husband’s case, many of us here will help if we can.

Prayerfully,

Loretta

Deathorglory

Hello Mtngirl

Hello Mtngirl,

Dysphagia (trouble swallowing) was how my EC first manifested itself.  I had really bad reflux for 20+ years and it felt like food was getting stuck before it got to my stomach (exactly correct).  After that not resolving itself for a few months, I went to my gastroenterologist and had an endoscopy.  He found the cancer right away, but I still had a couple of other tests to confirm that.  Sounds very much like your husband's story.  There are numerous possible reasons for dysphagia, though, and I hope it's one of those that is your husband's problem. 

If not, I hope you've caught it early and can get successful treatment.  If it is EC, please don't hesitate to get a second opinion.  Even if the diagnosis doesn't change, there may be different treatment options offered.  And the most important suggestion I can make is to go to a good cancer center.  50% of doctors and hospitals are below average.  Your husband deserves to go to the other half.  EC is not a sprained ankle that can be equally treated by the local hospital down the street.

Hope you get the best results on the biopsy & CT scan,

Ed

Mtngirl7533

LorettaMarshall said:

Mountain Girl ~ Will await your update

Dear Mountain Girl:

If you were born in the mountains, even if you move to the bright lights of the city, memories of those hills remain with you forever.  I say, it's having the best of both worlds to have been born in the mountains before coming to the big city!  So not sure if you really are a mountain girl, or if you just love to visit the mountains, but I like your name. 

You’ve come to a good link for information about Esophageal Cancer, if that is indeed the diagnosis indicated by the Endoscopy.   And I must say that what you say about the Endoscopy is alarming.  And as for you, I would definitely ask the gastroenterologist to conduct an Endoscopy for you also.  GERD can ultimately turn into something much worse, as I’m sure you are well aware.  So for now, we will just wait to hear further from you. 

Increasing the dosage of some type of omeprazole is not always a “fix-it” solution.  But we will wait for further word from you.  In any event, you will certainly want to have a SECOND opinion, if the endoscopy results show cancer.  Truly, this is a scary time for both of you.  However, there are plenty of us here who know about anxiety and bad times. We never want to say “welcome” to another cancer patient, but if such is your husband’s case, many of us here will help if we can.

Prayerfully,

Loretta

Thank you Loretta!

Tomorrow my husband is scheduled for a CT Scan with contrast! We should hear back re: the biopsy within the next day or two! I fear with the sudden weight loss and inability to get food down that we may have a long road ahead of us but will Do everything I can for him every step of the way! I do love mountains and have all my life! Ironically, my husband and I purchased property in the mtns and had a retirement home built About a yr ago! We go there to enjoy the peace and quiet as well as the beautiful scenery! We do have the Mountain View and have many wildlife that travel through the property including bear, Moose, coyotes, Fox, bobcat, etc! We absolutely love it there and are looking forward to living there permantely! Thank you so much for responding! It mean a lot to me! I also know someone who was just diagnosed with cancer and referred them to this wonderful site! Bless you all! 

Mtngirl7533

Deathorglory said:

Hello Mtngirl

Hello Mtngirl,

Dysphagia (trouble swallowing) was how my EC first manifested itself.  I had really bad reflux for 20+ years and it felt like food was getting stuck before it got to my stomach (exactly correct).  After that not resolving itself for a few months, I went to my gastroenterologist and had an endoscopy.  He found the cancer right away, but I still had a couple of other tests to confirm that.  Sounds very much like your husband's story.  There are numerous possible reasons for dysphagia, though, and I hope it's one of those that is your husband's problem. 

If not, I hope you've caught it early and can get successful treatment.  If it is EC, please don't hesitate to get a second opinion.  Even if the diagnosis doesn't change, there may be different treatment options offered.  And the most important suggestion I can make is to go to a good cancer center.  50% of doctors and hospitals are below average.  Your husband deserves to go to the other half.  EC is not a sprained ankle that can be equally treated by the local hospital down the street.

Hope you get the best results on the biopsy & CT scan,

Ed

To Ed

Thank you so much for your response! I appreciate the time you have taken to write! As I stated above, ct Scan with contrast is scheduled tomorrow and should get results from biopsy within the next couple of days! I will definitely update when I get more info! Thank you again and be well! 

Mtngirl7533

Diagnosis

Today my husband had a CT Scan with contrast! We also saw the ordering doctor who gave us the results of the biopsy! It is in fact cancer as we feared! Another test scheduled tomorrow! Endoscopic Ultrasound! These tests will give us a staging for his cancer! Doc also informed us that 2 lymph nodes are involved at this time! Doc will set us up with oncology early next week! I am praying they wont find any more spread of this disease and hope to get a staging soon! My husband is worried about finances being wiped out but I have tried to assure him that there are many resources to help with expenses! After tomorrow's test we are traveling north to our retreat home for a weekend of R & R, with me driving of course as he will be sedated for test! I will write more when I find out more! Right now I am emotional , mentally and phsically exhausted:p Alot to take in in one week! I am happy the Doctor is moving forward swiftly with this however! Bless you have responded! Be well!

Mtngirl7533

What type of cancer

i just realized as this week has been a blur of tests, that the doc never mentioned exactly what type of tumor my husband has! Whether adenocarcinoma, squamous cell or otherwise! He just said that the biopsy confirmed that it is in fact cancer! The ct scan today showed 2 lymph nodes involved! Tomorrow is the EUS, endoscopy with ultrasound! I know these tests are to stage the cancer and see if it has spread from what the doc has said! I am praying for the best! 

LorettaMarshall

Mtngirl~Have a safe trip 2 the mtns~The trip will do U 2 good!

Hello again -

Thank you so much for letting us know.  I cannot begin to share with you what I have learned from our own experience with Esophageal Cancer tonight.  I'm usually writing in "booklet form" with lots of references.  So I will just tell you that you absolutely need to have a SECOND OPINION at a major cancer hospital where the Minimally Invasive Esophagectomy is performed on a "routine" basis.  As Ed has said, this is not a cancer that you will run down to the hospital in your town and expect all will be well.  (That is unless you live near a major medical center where Esophageal Cancer is one of their “specialties!”  My own husband went to the University of Pittsburgh Medical Center.  Not that there is only one place to go, but the MIE is the laparoscopic surgery of choice.  Dr. James D. Luketich pioneered this procedure back in the mid-90s. 

Lastly, I will tell you there can be "life" after an EC diagnosis.  My husband had Stage III (T3N1M0).  His was Adenocarcinoma @ the GE junction.  It is more prevalent than the Squamous Cell type.  All 4 walls of his Esophagus had been infiltrated with the cancer and also 2 of his lymph nodes (next to the Esophagus.)  So while the stats are not good overall, if it is not Stage IV where the cancer has already spread to another major organ, there are survivors.  Even with Stage IV, there are still long-term survivors although the road is much more rocky!

And so we will talk for sure.  My husband is a miracle and is in his 15th year of survival with no recurrence.  So miracles do happen.  So I've been where you are today.  It's like you're at a critical turn in life and aren't sure which road to take.  I am not one to sugarcoat cancer and say "all will be well" because sometimes it isn't.  But just for tonight, know that I am really praying for you to make good decisions and get the best of doctors. 

I will tell you that if your husband has good insurance, you won't have to worry about the bills being paid.  So first of course, wherever you go for other treatments, be sure the insurance is going to approve whatever it is you need.   My husband and I have Anthem of Virginia as a Part D supplemental in addition to Medicare, Parts A & B.  We chose to pay more for a premium so we wouldn't have co-pays every time we turned around.  If we had to pay for all we’ve had done to the both of us, we would be absolutely “bankrupt!”  and then some.  As a kid, I used to hear my parents talk about the “poor house” as though it were a place you could go when you had nothing left to your name.  As a grown-up, I realize there is no such place as a “poor house” that will take care of you financially when you come up on hard times. 

So as understandably devastated as you are tonight, go to the mountains this weekend.  That’s exactly where we went right after my husband was diagnosed.  It was like “going back home” one more time, to see all our relatives and to reminisce about all the good memories we had together.  We never imagined that we would be here 15 years later.  So try not to “run ahead” of the doctors.  You obviously have an aggressive one that is moving quickly.  The only advice I will give you is to look to the Lord for guidance and wisdom to know what to do first. 

The mountain leaves are beautiful this year and in the western part of Virginia there are “umpteen” produce stands filled with bushels of apples, pumpkins, cabbage, etc.  at this time of the year.  There is a season for everything under the sun, and that is true of life as well.  But my husband and I have been blessed to still be together this far along in life.  I’m 78 and he is now 80.  We still have lots to be thankful for because there are still others that we meet that are “worse off than we are”.  For instance, one poor man at the oncology clinic today was being “wheeled right next to the scales” to get his weight.  It took two people to hold him up because he was so feeble.  But when he went by, I smiled at him—he returned the smile and gave me a wave.  I told my husband, “We still have so much to be thankful for.”  We got here today on our own power and no one had to hold us up!

So try to get some sleep.  That will be hard to do, but know that cancer doesn’t automatically mean “death” although that is the prevailing mindset as soon as we hear the word.  In my own case, my own diagnosis came with an automatic death sentence (Peritoneal Carcinomatosis/Ovarian Cancer Stage IV).  BUT by the grace of God I’m still here.  And so, my prayer for you and your husband will be that you will have every test you need and have the very best doctors there are to treat Esophageal Cancer.  Lord willing, I will send you a much longer letter, outlining the usual “travel route” that Esophageal Cancer patients will most likely take.  (Depending on their stage)

Try as best you can, not to “live through the next year” when you’re at your favorite hideaway this weekend.  Oh, and one more thing, as soon as we knew for certain what my husband’s diagnosis was, we told our family and friends.  We thought it was easier for them to not be afraid to “talk about cancer” because we weren’t afraid to talk about it openly.  And one more thing, try to dismiss those who think they are doing you a favor when they tell you about someone they knew that “died”.  We had those “well-wishers” too.  They mean well, but do your homework on this particular cancer, and you will be confident that you are doing all you can do.  God has blessed our country with many good doctors and we pray you will find the very best.

Love & prayers,

Loretta (& William)

P.S.  Be sure to ask for copies of all the scans & tests as you go along. That way you won’t have to “backtrack” to find all the records when you have that 2^nd opinion.  Without going into an explanation here, just ask the doctor to be certain your husband has a HER2 test.  Some EC patients have an over-active oncogene that causes the cancer to spread more rapidly.  All cancer patients will not test positive for this, but all should have the test.  If so, there is a medication (not a chemo) that can be given (in addition to any prescribed chemo) called HERCEPTIN which helps greatly to curtail the spread of that over-expressive gene.  

Mtngirl7533

Dear Loretta!

You have been a blessing in our lives already without knowing it! You have a wealth of information! I have been making a list to take to our 1st appointment at the Cancer Center and have added questions thanks to you! Unfortunately my mind is on overload and some of the things you mentioned such as the HER2 test, I had forgotten about! I believe people who cross our paths, cross for a reason! I am so grateful for people like you on this Earth! Hubby was just diagnosed with Adenocarcinoma TN3. Just lymph involvement and no organs from what they can see! I am already so grateful for that but know there is a long battle ahead! Thank you from the bottom of my heart! I am also praying for you and your husband for many more healthy, wonderful years together! I would like to think that God has blessed me as I always pray for humans and animal kind that I don't even know! I will be a frequent visitor on this site and have already recommended it to a sweet young lady of 17 that was diagnosed with Cancer! Bless you<3